Loss of coordination in leg - Official runner's dystonia / focal dystonia discussion thread

Thanks to everybody who has posted on this thread. I have read through it (entirely) and have searched for answers. Yes, the Doctors and PTs think I'm crazy when I try to explain a "loss of coordination" in my right leg. This thread has been such a source of consolation. Having said that, I suspected right from the beginning that I had a labral tear. The symptoms: I've had tightness followed by loss of coordination in my right leg for the past 3 years when running anything on the roads over 1 hour, ten minutes into any race, and it comes on faster on downhills and the treadmill. Tempo runs on the treadmill is the kiss of death for me. My right leg is totally fine on trails, grass, snow, and uphill. I can run fast and long with no loss of coordination. I have been in PT for 4 months for strengthening, done yoga, stretching, dry needling, ART, Graston, and have had two MRI's: the lumbar MRI was totally fine, but the Pelvic MRI (without dye) shows a small anterior labral tear, as well as small joint effusion (which I'm thinking could be arthritis?). My Doctor still does not think the issue is the labral tear, as I don't have pain per se. Frustrated Runner and others it helped to read that you didn't have pain initially either. So...my question for anybody who has been there and made it out on the other side: if a labral tear shows up on just a regular MRI (instead of an MR-Arthogram), doesn't that seem to indicate that that is the root of the problem? I was also born with hip dysplasia that was only "helped" by double diapering, I'm told - no treatment. Any feedback would be much appreciated!!

Your story is very similar to mine. I feel no pain, just a loss of stability-like feeling. My PTs and doctors would also look at me like I was crazy. One PT told me it was all in my mind. Then, I got a PT who was actually a runner and she helped me a lot with Identifying the issue. So commonly, and for me, a muscle group gets very tight and doesn't work properly. And when in an injury state like that, the body inhibits the glutes as a defense mechanism to slow the person down.

I also had a labral tear and my PT told me not to worry about it, because they are common in runners and usually don't cause any problems. For a while I thought I had a problem with my hip, but that wasn't the cause of my symptoms (for me anyway).

It will be 3 years at the end of February that I have been dealing with this. Only about a year ago I found that my glute weakness was the

culprit. At first, I didn't want to believe that was the problem, because I didn't feel as symptoms associated with that area. However, after starting to do exercises involving squeezing my glute and other simple glute max/ medius exercises, I began to feel more stability and coordination. Thus, my glute weakness was clearly shown to be my problem.

Also, when I run on grassy/soft surfaces, my leg feels so much better than on hard surfaces too. I think because the soft surfaces absorb some of the force or something like that. In addition, it makes sense that you would feel more coordination going uphill, because the glute is more activated when going uphill. Furthermore, when I run on the treadmill, I also feel very bad. On the treadmill, it also most like I wobble back and forth. Overall, running feels annoying.But there's hope! I've been getting steady improvement for months with doing glute strength/ activation. Mostly its about teaching the glute to turn on again, re-establishing the neuromusclar connection.

I don't know for sure, obviously, if glute weakness is your problem. But, it was mine and I really don't want anyone to feel as lost as I did. I feel so much better knowing what the problem is and actually getting improvement. I feel I only need probably a couple more months to feel back to normal. Once you ID the problem, everything is easier.

I hope this helps. Lastly, you could be doing glute strength, but your not focusing on activating the glute. Focusing on activating the glute during exercises really makes a big difference. Keep me posted on your journey and ask me questions if needed as I know what your going through!

Pretty sure it's AIDS.

Thank you so much Runnnnn!

Hi all

I've referred to this looonnngg thread in the past and replied once before as well. I'd just like to give an update on where I am with my condition/treatment which came on first in April 2013 and has worsened significantly since.

BACKGROUND

Around 1.5 years ago I had my first MRI on my spine plus nerve conduction tests. The nerve conduction tests were clear (as I expected really as my issue only happens while running anyway), but my MRI showed "excessive wear for age" on L5/S1 (I was 27 at the time). The doctor determined that this wasn't significant enough to cause any issues however, and wanted to go back to exploring issues in my running form/muscular strength.

After months of glute strengthening and other gym work there was no improvement in my running. The loss of leg coordination was now coming on within 5 minutes of starting out running and making even running one mile unbearable (no pain, just awkward - symptoms as common throughout this thread). Considering that I have now taken up cycling and completed a hilly 100 mile cycle this year with no problems in a reasonable time - yet I can't run even one mile - I wanted to further explore some physiological problem again.

NOW

I've seen another doctor and he has looked at my MRI in more detail and thinks that the "excessive wear" previously spotted could be causing issues due to bone spurs compressing my nerve at L5/S1. I've now had 2 x nerve root block injections/epidurals, one back in August (the effects lasted only one month) and one in mid December, which I am still enjoying the benefits of. I'm running up to 2 miles at the moment, and it feels so much better.

I've had one instance in the last couple of weeks of loss of leg coordination when running downhill (thinking natural tendency to lean back would further compress nerve)

This diagnosis makes sense to me when looking at my cycling as well which I can still do happily and comfortably (albeit last so in the cold and dark British winters). There is no back load when cycling due to being in a leaning forward position relieving any spinal compression.

Nerve root injections will never be a permanent solution and the next step would be surgery to remove the bone spurs. This is a big step and I am asking myself if it's worth it simply for the 'luxury' of being able to run again. The risk, I've been told, is around 1 in 500 of further nerve damage. Furthermore, I don't really feel that I've had a firm diagnosis (circumstantial diagnosis combined with trial and error on injections!), and the problem may simply redevelop in 5 years or so. I can cycle happily so why would I take the risk? The truth is that I'm a runner and miss it every day, so I probably will have the surgery.

I'll let you know how my recovery goes if I do have the surgery, and just hope that this can be of help to someone else as well. Moral of the story is to always get a second opinion from another doctor on dodgy sounding MRIs!

Becca

Hi Becca,

Good luck whatever you decide about the surgery. I want to offer a different idea.

Like you I was once a biker and had to give it up for injury. Now I'm a runner. I'm not a Buddhist, but I found the notion of non-attachment very helpful in this change. There are big things (health, environment, the meaning of life) and there are small things (running, biking, etc.). When a small thing gets me down, I think of the big things, and let the small thing go.

If it were me, I would never do your surgery just so I could run, just like I did not do my surgery so I could bike. If it affects normal activity, that's different. Even then I chose rehab over surgery. I was about your age then, half a lifetime ago. Still can't ride much, very little regret.

A final point is that postponing tricky surgery can be a good idea, as the medical knowledge and technology gets better every year. You can say no to surgery _now_, and reassess at any time.

This is not a knock on the medical profession, they do amazing things. Just offering my opinion because you seemed not quite certain on your decision. Again, good luck whichever way you go.

Hi Alan

Thanks for your message, it is good to hear other people's views as I know it's a big decision (and really not one I will take lightly)

I've heard various opinions from friends and family members, and many are similar to what you have expressed. In fact I came to the same conclusion when I was first offered the surgery and told of the risks 3 months ago. Others of course tell me that they would do it, but until someone is faced with the decision of potential risky surgery vs never run again it's difficult to know what decision they would make.

My decision isn't final (I'm seeing the surgeon next week), and I will consider your thoughts. You're right that running isn't everything and I've certainly pinned a lot of my happiness on it over the last few years since my injury developed. Running was my whole life for many years, and even now most of my friends are runners and, so far, cycling hasn't cut it as an alternative for me - I've lost motivation and purpose and I'm thoroughly depressed. You're right that there are bigger things, and it's a good thing to remember!

Thanks for your thoughts.

Becca

May I ask how you "focus on activating the glute" during exercise? Do you just make a mental effort doing so?

I'm a competitive runner myself, having run for one of the more prominent D1 programs in the NCAA. (Graduated 2015) Dealing with this issue for ~3 years now. Getting FAI/Labral surgery on Monday. Hours and hours of therapy, rehab, tests all show nothing. Have had a nerve ablation done as well, did nothing. I'm very confident this is the right diagnoses and would encourage you all to meet with a hip specialist to discuss. My hip aggressively clicks, pops, snaps, etc during exercise and even just sitting around. When manipulated properly, intense pain also occurs in the joint capsule. Best of luck to you all. This has been one hell of a bumpy road for me, as I'm sure it has been for you all as well. I will hopefully post back on this thread in 3-6 months with some encouraging information for you all.

I would just like to pay homage to the longest non-troll running thread, except that it makes loss of leg coordination seem like the most common running injury.

Absolutely. I am going to start a series of blog entries as well, and I hope I can illuminate more on the other side of this.

This was a precursor to a worse injury at the end of a track season with many PRs. It started off as a right quad strain which I ignored. I paid the price on a hilly run when I lost control. This resulted in an adductor injury that took two months to heal. I have not had that issue since after following a strict strength maintenance program.

Strength: Single leg quad eccentric drops on a step, Single leg RDL, Lunges, resistance band walks, single leg sideways raises with band (for the adductor).

Maintenance: Quad rolling, resistance band hamstring stretch, quad wall stretch, ART as need be.

I did the maintenance work every day and strength 2 x week. Never had a problem since.

Thought I'd update a bit on my situation. After not running for 5 months, I started up again slowly in October. I can now run 4-6 miles depending on how the leg feels. Some days are very good, some are very bad. Despite my best efforts, I've never been able to correlate this with anything I do.

Before I took the 5 month break my foot was really screwed up (PTT, PF, really bad heel pain). My foot is fine now and I can conclude that something else higher up is causing this.

The main issue I feel when running is consistent with what was happening before my break. I really feel this tightening in my semimembranosus (lower-inner hamstring behind the medial side of the knee). It is very focused in that location. Once it starts the only way to stop it is to switch terrain (jump onto the lawn/dirt) or hope you encounter a uphill / downhill. Else, I have to stop for a little bit. If I'm really stubborn about not stopping, it almost feels like that tendon might snap although it does not hurt at all. Anyways, I try not to do that anymore.

I'd agree that a hip problem is likely the root cause, but unlike some posters on this board I really have no hip pain and no trouble sitting for long periods of time. The hip on my bad side does click (no pain) if I do a bicycle sit up.

Wanted to also ask a few questions I'm not sure I've seen addressed on this board.

[1] Does massage or foam rolling make this worse. I've noticed on multiple occasions (but not always) a hard massage can really induce that dead feeling in my lower inner hamstring.

[2] Is it possible that all these PT exercises and weights, etc... are somehow making this problem worse rather than helping. One of my coach's used to tell us to never do squats because there bad for running. I suppose this is wishful thinking, but I'm wondering if anyone in this thread dropped all this crap and just ran. Did things get better or worse?

DF,

I started a strength routine only after the rest and shuffle-your-way-back-to-fitness no longer worked. I tried different exercises out of sheer desperation and settle on ones that made me feel better.

As for rolling, I reserve it for the quads (a big problem area for me) and ocassionly the calves. Rolling has never made me feel worse. However, I found that ART with a ball must be used judiciously. I have made glute/butt and outer hip issues worse.

Not sure if this answers your questions, but hopefully a few better posts can keep this thread alive.

Hi Run7.

So I've been playing the same game you have for 5 years...tried PT, injections, dry needling, chiro ect.

I'm currently seeing a hip specialist in Boulder, CO named Dr. Mei-Dan. When I lived in OH, I was diagnosed with the larbrum tear and impingment. Dr. Mei-Dan believe the root of this is from mild hip dysplasia, which for me specifically means that my hip socket is not properly covering the head of my femur. I am considering PAO surgery (and have talked to several runners who have already had the surgery).

Definitely keep us updated!

My hip specialist in Boulder gave me the option of Labrum/FAI surgery or PAO to reposistion my hip socket. I'm most likely going for the PAO (which sounds crazy but he was certain that this would fix my issue while labrum/FAI only had a 20-30% chance.

Best wishes to you on your surgery!

How many people on this post (with symptoms) have seen a hip specialist?

I've been diagnosed with hip dysplasia (but I dont have pain) so am wondering if it is still the cause of the loss of control over my left leg.

Ray11, so sorry to hear you have been playing this game too. So frustrating. Let us know what avenue you consider regarding surgery. I had an MRI (w/o dye) that showed a labral tear on the problematic (right) side. My ortho still doesn't think that is the problem. I really believe it is. I have an EMG scheduled, and the diagnostic injection into the hip in 2 weeks. I've heard there are some great hip specialists in CO. I am in MA, but I haven't shopped around for surgeons just yet. I am 100% for the surgery if it would allow me to run normally again! Keep us filled in, and again, sorry you are dealing with this as well.

ecouraginginfo wrote:

I'm a competitive runner myself, having run for one of the more prominent D1 programs in the NCAA. (Graduated 2015) Dealing with this issue for ~3 years now. Getting FAI/Labral surgery on Monday. Hours and hours of therapy, rehab, tests all show nothing. Have had a nerve ablation done as well, did nothing. I'm very confident this is the right diagnoses and would encourage you all to meet with a hip specialist to discuss. My hip aggressively clicks, pops, snaps, etc during exercise and even just sitting around. When manipulated properly, intense pain also occurs in the joint capsule. Best of luck to you all. This has been one hell of a bumpy road for me, as I'm sure it has been for you all as well. I will hopefully post back on this thread in 3-6 months with some encouraging information for you all.

Thought I'd update you all again. 2 weeks post op. Omer Mei Dan was my surgeon. He operated on BOTH hips at the same time. I had a micro fracture up to 52% done on my right hip, which was way worse than my left hip. Immediately after surgery I noticed that my hips felt almost "unlocked". I have no pinching or catching when I'm spinning or biking. I wake up in the morning without the feeling that I need to snap my hip back in place. Hopefully when I come back from this, the procedure will allow me to use my ass when I'm running. If anything, I will have a significant increase in range of motion which will take some getting used to. I will continue to update you all throughout the process. Again, I encourage you to see a REAL hip specialist that focuses on athletes and not the everyday ortho who see's old people with PAIN. I know that PAIN isn't a real symptom which makes things confusing...